I had a TT in Feb. 2010 (papillary carcinoma, 1.2 cm tumor on right side) and RAI (101 millicuries) in March 2010. 10 day follow up scan showed uptake in my neck only, on the right side. They let me see the pictures and the report said I had enlarged lymph nodes on the right side.
I just had my 6 month (Thyrogen stimulated) whole body scan, and the area on the right side of my neck was completely clear. However, I saw a new spot on my left jaw / cheek area. Everything else was clear. The radiologist recommended a PET CT to hopefully rule it out as a salivary gland issue. I had the PET CT last week and the report didn't say anything about a salivary gland. It indicated that there is a small (8 mm)spot on my left side, by the suprasternal notch. This did not show up on the whole body scan (at least it wasn't mentioned in the report.) I'm no expert with this stuff, but I don't think the suprasternal notch is near my salivary gland. My Tg has been virtually undetectable since the first round of RAI (< .02) and still is at that level. Nevertheless, my endo sent me back to the radiation oncologist for a repeat round of RAI.
I met with the radiation oncologist last week and he said that 15% of his patients need 2 rounds of RAI. He felt the right side of my neck had so much uptake that all of the other tissue didn't get treated all the way. Determining the dosage isn't a perfect science, it's probably just leftover thyroid tissue that didn't show up on 10 day scan, etc. He plans on administering another round (approx. 100 millicuries) on Nov. 29th. He said that it's no problem to do these treatments within 6 months of each other.
Any recommendations on what I should be doing now in terms of research, more testing, etc.? The first round of RAI was supposed to be for peace of mind. Should I get a second opinion and if so, from whom? Why would the area that lit up on my whole body scan be different from the area that lit up on my PET CT and vice versa?